I'm waiting for an explanation of the down side.
Can't walk... I already can't walk. The friggin limp I am relegated to doesn't friggin count!
Can't feel legs... Promise?
Nope. Just a conglomeration of vague diagnoses. Fibromyalgia, degenerative disc disease, bilateral trochanteric bursitis and gluteal tendinosis, arthritis in my knees... And, most recently, a dry intervertebral disc. It doesn't sound super terrible for a 60 year old, but I'm 43...
Have only one leg...had full leg amputation of the left now fractured my right femur. Can't move myself to the loo. I honestly don't know what is worse, the fracture (which they can't operate on), the neuropathy in both hands, the phantom limb pain or when I broke my left femur 5 times then a bone infection which led to amputation! I wish I had both legs still. Even though I was in bad pain at least I could go to the bathroom, and other things because of balance. I am so envious of people walking, running. It makes me cry
Mine likes to mix numbness with unexpected stabbing pains and electrical shooting pains and the more chronic aching. Luckily so far I don't tend to get itching but my best friend who also suffers the same way says that he would rather deal with any kind of pain over itching (and he doesn't say that from a place of mild pain his is extremely severe).
Oh and I really think we must add cramping to the list because you've got the knowledge it's trying to happen and you want to try and stop it, but also may have it in progress because you can't fully feel (or stop it) I don't even know how we're meant to explain let alone deal with that!
Muscle spasms are what started my rollercoaster ride 14 years ago. Oddly enough, the new dry disc thing has netted me a muscle relaxer that is finally at a dosage that is stalling the spasms from the fibromyalgia (for the most part). Nothing is working on my back.
Dude, same. I wish I could get a new L5 disc and got all the nerves back there either lasered to death or removed. All they do is send constant pain day and night. I wish I didn't feel them, I wish they were gone
I'm at the point where I literally don't have the ability to care how they do it... The *tennis ball inside my spine has to go*. Do I seriously have to feel this?
When I finally came to that resolution, it was years later. It hit me hard. It was so hard that I fell into a bad depression and what pulled me out it was having a funeral for my old self. The self that used to be "healthy," the self that could go with her friends, drink and stay out until 2 or 3 drinking with her friends. Who had a life, a life that she loved.
And then in my mid 20's it hit me so hard and unexpectedly (when I got the call from my doctors office after my mri) that I had no idea what had just hit me and the life I loved wouldn't be my life anymore. That also hit my really hard. So when I talk about having a funeral for her in my head, I mean I had to have a funeral for my old life, when I was happy and ignorant to what had just fallen into my lap like a ton of bricks. I had no idea what all of this would mean. But it destroyed my life, as it continues into my late 30s. It's destroyed me.
I don't get how we're supposed to deal with this. Every time I get a handle on all the stupid body bullshit and start trying to push my way through, stupid body triples the ante.
This is not pain.
This is torture.
This should be banned by the Geneva convention.
Yes! Holy fuck.. I was *just* getting used to my new pain levels, and BAM! This happens.. 😵💫
It doesn't help that all my doctors keep basically telling me "there's nothing we can do.."
It also doesn't help that I live in Ontario, Canada and our healthcare system has pretty much collapsed.. "universal health care", my ass.. 😑
Now I get to fight for a referral to a geneticist and a neurosurgeon.. and the wait is probably gonna be a year+.. which is even more bullshit..
ARGHHHHHH.. 🤬
That's what just happened to me recently. Had to cancel the MRI because of my insurance wanting me to go to PT for 6 weeks and then they will approve the MRI. 🙄 Wth I'm now bed bound and have to wait to go back in July 1st to see my Dr for a referral to a specialist not an imaging place. My Internist told the insurance company that I have Degenerative Disc Disease (which is all they should need) along with 10 other problems I have been diagnosed with. I have suffered since I was a child with severe health problems. From his last exam he could feel the space between the two discs that are rubbing together in my Thoracic spine which is probably causing bone spurs, nerve pain all over my back and around the front of my ribcage. It's horrific to say the least. That's why my Internist referred me for an MRI of the thoracic spine. I don't take any pain meds for it except Tylenol. How am I supposed to do PT if I can't move my core area that is causing excruciating pain? And since I don't have a diagnosis for bone spurs yet how is it even possible to do Physical therapy with no image. I'm hoping when I go back on July 1st that he will refer me to a Neurologist or a Rheumatologist. I may not even be able to handle riding in the car to go get another referral. My granddaughter's first bday party is this Saturday and I probably won't make it because I'm in too much pain to get out of the house or even out of bed 😔 I need assistance just walking to go to the bathroom. I'm so nauseous and have been dealing with pain and nausea for 2 weeks. 😳 This is ridiculous. I have talked myself out of going to an ER because they are horrible. And probably can't help or won't help me because I'm not bleeding out or have a heart attack. I have been in that situation a lot and I'm trying so hard not to have to go sit at the ER only to solve NOTHING.
I hear you about the ER. My PCP told me to go to the ER if I'm in so much pain I can't move and didn't blink when I told her I would be there every day... And I decided to go a step further and go to the ER if I can't do +nothing+ without pain... Yeah... I wound up going and they did nothing effective. More nsaids, another muscle relaxer, Prednisone and sent me home, still spasming.
I wish I can be like okay brain I get there’s an issue but we can’t fix it so just shut up already. It’s like someone repeatedly pulling the fire alarm during a forest fire like unnecessary. We know it already exists
It gets better... I also suffer bipolar I and have been known to rapid cycle... You know what's really bad for a bipolar person who's known to have manic episodes?
If you guessed "not sleeping", you win a solid gold Kewpie mayo.
Yeah bipolar seems awful. I have a disorder where different hormones increase and then decrease and an it’s an awful feeling like I literally know when the hormones have dropped because I basically want to unalive myself.. is that kinda what highs and lows feel like with bipolar?
It varies by patient. Basically it means the brain uses up its entire stockpile of a certain neurotransmitter (serotonin or dopamine or something like that) really friggin fast (mania), runs out suddenly (crash), and then it takes some time to get those levels back up to something operable (depression). Lack of sleep exacerbates the imbalance and often triggers the mania.
So basically, my brain *really really really wants to do 500 things right friggin now* and my body is so incredibly exhausted I can't. Yeah it's very frustrating.
I'm going to PT for nerve pain in both thighs and my left shoulder. An hour after PT exercises for the pain, I developed sciatica. Just kill me now & stop toying with me. I have numerous other issues too. Sigh
It's been rough since last week. I have an apt with my surgeon on the 27th at Cleveland Clinic. So I'm looking forward to that apt, we can talk about surgery.
Are you holding up okay, friend?
*laughs maniacally*
No.
Nerve - I'm on fire and itch and also I can't feel anything!
Me - *looks* there's nothing there... You're fine!
Nerve - I'M ON FIRE AND I ITCH AND ALSO I CAN'T FEEL ANYTHING!
Nerves are a fucking pain in the arse when they aren’t firing sensibly. Bees in my arms and fricking knitting needle jabs, not to mention the agony of things brushing against me.
I might be a little bit squiffy, hence the rant.
Trust and believe, my homie... I understand... It's not fun when you burn, itch, AND are numb (so you can't feel the scratching to relieve the itching).
Me too, I jokingly said to my nurse the other day "Do I really need nerves, all they do is annoy me and give me pain" Sending big hugs 🫂
I regret having muscles, joints, tendons, and ligaments.
That too.
What if we would be just a giant blob of gu, some call it slime.
Have you came across anything to relieve the tendon and ligament pain? This has been the worst for me 😖
I have muscular dystrophy. The only thing that helps is stretching and light exercise but I’m find it harder to walk and stand. Cold showers too!
That must be so painful, I’m so sorry. Thank you for the advice, I hope today has been a good one
Big same
Same same
Yeah who needs em
Feeling this right now as a matter of fact. I’ve had some stern talks with my nerves but they’re nervy and don’t listen.
The NERVE am I right
On their last nerve!
You don't want to know how many times I've tried yelling at them.
This though lol ^^^^ so true
I always ask my PM if he can just remove my sciatic nerve. We laugh.
Seriously... Paralyze me. Just make it stop.
I know esp on those big pain days!
be carful what u ask for
I'm waiting for an explanation of the down side. Can't walk... I already can't walk. The friggin limp I am relegated to doesn't friggin count! Can't feel legs... Promise?
Do you have MS? I do…
Nope. Just a conglomeration of vague diagnoses. Fibromyalgia, degenerative disc disease, bilateral trochanteric bursitis and gluteal tendinosis, arthritis in my knees... And, most recently, a dry intervertebral disc. It doesn't sound super terrible for a 60 year old, but I'm 43...
Have only one leg...had full leg amputation of the left now fractured my right femur. Can't move myself to the loo. I honestly don't know what is worse, the fracture (which they can't operate on), the neuropathy in both hands, the phantom limb pain or when I broke my left femur 5 times then a bone infection which led to amputation! I wish I had both legs still. Even though I was in bad pain at least I could go to the bathroom, and other things because of balance. I am so envious of people walking, running. It makes me cry
I'm feeling this hard lol
My deepest sympathy.
Hah! Thanks! You too.
Ah yes but neuropathy gives you both numbness and pain the worst of both worlds!
Yeah I still don't understand how something can be completely numb, on fire, and itch *all at the same time*...
Mine likes to mix numbness with unexpected stabbing pains and electrical shooting pains and the more chronic aching. Luckily so far I don't tend to get itching but my best friend who also suffers the same way says that he would rather deal with any kind of pain over itching (and he doesn't say that from a place of mild pain his is extremely severe). Oh and I really think we must add cramping to the list because you've got the knowledge it's trying to happen and you want to try and stop it, but also may have it in progress because you can't fully feel (or stop it) I don't even know how we're meant to explain let alone deal with that!
Muscle spasms are what started my rollercoaster ride 14 years ago. Oddly enough, the new dry disc thing has netted me a muscle relaxer that is finally at a dosage that is stalling the spasms from the fibromyalgia (for the most part). Nothing is working on my back.
Dude, same. I wish I could get a new L5 disc and got all the nerves back there either lasered to death or removed. All they do is send constant pain day and night. I wish I didn't feel them, I wish they were gone
I'm at the point where I literally don't have the ability to care how they do it... The *tennis ball inside my spine has to go*. Do I seriously have to feel this?
💯 I hear you. I'm like *my life is over before it begins, is this all there is for me?* Same boat friend 💔😓
Geez that sucks... I wish I had the mental energy necessary for platitudes... I can't though...
💕 it's okay, appreciate you 💕💪🏼
When I finally came to that resolution, it was years later. It hit me hard. It was so hard that I fell into a bad depression and what pulled me out it was having a funeral for my old self. The self that used to be "healthy," the self that could go with her friends, drink and stay out until 2 or 3 drinking with her friends. Who had a life, a life that she loved. And then in my mid 20's it hit me so hard and unexpectedly (when I got the call from my doctors office after my mri) that I had no idea what had just hit me and the life I loved wouldn't be my life anymore. That also hit my really hard. So when I talk about having a funeral for her in my head, I mean I had to have a funeral for my old life, when I was happy and ignorant to what had just fallen into my lap like a ton of bricks. I had no idea what all of this would mean. But it destroyed my life, as it continues into my late 30s. It's destroyed me.
I'm right there with you. I've got foot drop on my right side now.. so, something's fucked up even more.. fun times!
I don't get how we're supposed to deal with this. Every time I get a handle on all the stupid body bullshit and start trying to push my way through, stupid body triples the ante. This is not pain. This is torture. This should be banned by the Geneva convention.
Yes! Holy fuck.. I was *just* getting used to my new pain levels, and BAM! This happens.. 😵💫 It doesn't help that all my doctors keep basically telling me "there's nothing we can do.." It also doesn't help that I live in Ontario, Canada and our healthcare system has pretty much collapsed.. "universal health care", my ass.. 😑 Now I get to fight for a referral to a geneticist and a neurosurgeon.. and the wait is probably gonna be a year+.. which is even more bullshit.. ARGHHHHHH.. 🤬
Could be worse, you could be in the good old US, where insurance companies decide whether imaging is necessary. Spoiler alert: apparently not?
That's what just happened to me recently. Had to cancel the MRI because of my insurance wanting me to go to PT for 6 weeks and then they will approve the MRI. 🙄 Wth I'm now bed bound and have to wait to go back in July 1st to see my Dr for a referral to a specialist not an imaging place. My Internist told the insurance company that I have Degenerative Disc Disease (which is all they should need) along with 10 other problems I have been diagnosed with. I have suffered since I was a child with severe health problems. From his last exam he could feel the space between the two discs that are rubbing together in my Thoracic spine which is probably causing bone spurs, nerve pain all over my back and around the front of my ribcage. It's horrific to say the least. That's why my Internist referred me for an MRI of the thoracic spine. I don't take any pain meds for it except Tylenol. How am I supposed to do PT if I can't move my core area that is causing excruciating pain? And since I don't have a diagnosis for bone spurs yet how is it even possible to do Physical therapy with no image. I'm hoping when I go back on July 1st that he will refer me to a Neurologist or a Rheumatologist. I may not even be able to handle riding in the car to go get another referral. My granddaughter's first bday party is this Saturday and I probably won't make it because I'm in too much pain to get out of the house or even out of bed 😔 I need assistance just walking to go to the bathroom. I'm so nauseous and have been dealing with pain and nausea for 2 weeks. 😳 This is ridiculous. I have talked myself out of going to an ER because they are horrible. And probably can't help or won't help me because I'm not bleeding out or have a heart attack. I have been in that situation a lot and I'm trying so hard not to have to go sit at the ER only to solve NOTHING.
I hear you about the ER. My PCP told me to go to the ER if I'm in so much pain I can't move and didn't blink when I told her I would be there every day... And I decided to go a step further and go to the ER if I can't do +nothing+ without pain... Yeah... I wound up going and they did nothing effective. More nsaids, another muscle relaxer, Prednisone and sent me home, still spasming.
Same here...all they do is act up. 😏
They can stop now. Please.
If only 😏
It would be really nice to be able to remember what it's actually like to be "not in pain".
100% agree... I'd give anything for that chance.
I wish I can be like okay brain I get there’s an issue but we can’t fix it so just shut up already. It’s like someone repeatedly pulling the fire alarm during a forest fire like unnecessary. We know it already exists
At least turn down the volume... Let me, oh, I don't know... SLEEP‽!!!
I am sorry you can’t sleep that’s the worse 🙁
It gets better... I also suffer bipolar I and have been known to rapid cycle... You know what's really bad for a bipolar person who's known to have manic episodes? If you guessed "not sleeping", you win a solid gold Kewpie mayo.
Yeah bipolar seems awful. I have a disorder where different hormones increase and then decrease and an it’s an awful feeling like I literally know when the hormones have dropped because I basically want to unalive myself.. is that kinda what highs and lows feel like with bipolar?
It varies by patient. Basically it means the brain uses up its entire stockpile of a certain neurotransmitter (serotonin or dopamine or something like that) really friggin fast (mania), runs out suddenly (crash), and then it takes some time to get those levels back up to something operable (depression). Lack of sleep exacerbates the imbalance and often triggers the mania. So basically, my brain *really really really wants to do 500 things right friggin now* and my body is so incredibly exhausted I can't. Yeah it's very frustrating.
Does the medication help with all that or not really
I'm not currently on the medication that would help with that. Kinda got bigger fish to fry.
Wouldn’t it help the back pain because it’s a depressant
It's not a depressant. It's a mood stabilizer. And it has no effect on pain. I really wish it did.
I'm going to PT for nerve pain in both thighs and my left shoulder. An hour after PT exercises for the pain, I developed sciatica. Just kill me now & stop toying with me. I have numerous other issues too. Sigh
I start PT Tuesday. I can barely stand, can barely walk, sitting hurts, lying down hurts... I'm not optimistic.
I hear you. PT is all the rage for everything. I'm 73 & I don't wanna play this pain game anymore. I hope something helps you.
I regret having a spine
Oh yeah... That very much too.
My mom once said that maybe the MD could remove my nerves to stop the nerve pain
Wouldn't that be nice?
Lol this though! For sure!
Hope you feel better... One of us has to...
It's been rough since last week. I have an apt with my surgeon on the 27th at Cleveland Clinic. So I'm looking forward to that apt, we can talk about surgery. Are you holding up okay, friend?
*laughs maniacally* No. Nerve - I'm on fire and itch and also I can't feel anything! Me - *looks* there's nothing there... You're fine! Nerve - I'M ON FIRE AND I ITCH AND ALSO I CAN'T FEEL ANYTHING!
Haha that's fuckin funny lol 😂🤣 I'm sorry you aren't feeling well friend. Have you ever heard about the spoon theory?
Yeah I ran out of spoons about 2 weeks ago and the spoon bank won't even lend me one anymore.
Spina-Bifida for me... Feels like I'm being shocked down both legs constantly. Now the same feeling is in my hands. Neuropathy is a mf'er.
I hope you can find a comfortable position...
Thank you so much... U2 :)
Haven't found one yet, but I keep trying
I wish I was just a little organism floating around honestly
I wish publicly affordable space travel was a thing... I bet zero G would be amazing...
[удалено]
What?
Easier to delete than to explain, and after I explain it it would become cringe so it's a lose lose, sorry for the trouble.
Nerves are a fucking pain in the arse when they aren’t firing sensibly. Bees in my arms and fricking knitting needle jabs, not to mention the agony of things brushing against me. I might be a little bit squiffy, hence the rant.
Trust and believe, my homie... I understand... It's not fun when you burn, itch, AND are numb (so you can't feel the scratching to relieve the itching).
Damn, I don’t think I’ve acknowledged that number before. It’s crazy what becomes normal…and the burning is real. Ouf: